(This piece is from back in August. My apologizes for the lengthy post gap, and my thanks to you, loyal readers, for bearing with me).
When in London, we like to visit friends, and one family in particular who we're pretty sure we won't be able to see on our side of the world, since they rarely travel outside of England.
Their first-born, D, is a handsome, dark-haired boy with huge brown eyes, who came into the world with an exceedingly rare condition that has left his mind stranded in early infancy, even as his body continues to grow. On our last visit, when D was five, they shared with us one of his recent accomplishments -- reaching forward to push a large button on a musical toy. Now he is seven and he is much the same, only bigger and heavier.
Our time with them this afternoon was brief, which was really too bad, but during that two-hour visit I began to understand a little more about a few aspects of their lives. Here are some of the "simple" things, things I'd barely thought about before now.
Recycling. I offered to take a couple of glass bottles out to the curbside bins, and casually remarked that I wished Israel also had a curbside recycling program. Our friend, D's mother, pointed out that since cardboard was added to their borough's list, only a few months before, their lives had gotten a bit easier. Previously, they disposed of all those carton containers housing D's special feeding and care supplies only by dividing them among their neighbors' waste bins, since London's notoriously strict waste collection laws require that all items fitwithin the bin, or else forgo collection.
Shabbat. As D's body grows, he gains weight but not strength, and his parents can no longer lift him with ease. Several rooms in their house have been fitted with ceiling tracks for an electric hoist system to aid them in day-to-day care for D. But the hoists cannot be operated on Shabbat, nor can they be fitted with a time switch, since their control requires precise adjustments in real time, or D could be crushed. If they exchange the electric hoist for a hydrolic one (their health plan will only fund one), they solve the Shabbat problem but are stuck with an awkward manual one seven days a week. (One potential solution? Ebay...).
Unplanned "surprises." D and his family have known many good days in a row, days in which D can enjoy his classmates' company, bang away on his keyboard, and lie peacefully while his siblings play around him. And then comes the now long-expected unexpected: nonstop seizures that can last through day and night, leaving D exhausted and confused, and his parents feeling exhausted and helpless. It is just awful watching your child suffer, his mother writes me, and D clearly suffers.
Food and drink. D has dysphagia and struggles to swallow. All his liquids must be mixed with starch until they form a paste, to prevent them ending up down his windpipe. All foods must be pulverized, and even then he struggles to consume enough calories, and there are days when he suffers seizures and cannot eat at all. During these times he receives his nutrition via a PEG directly into his stomach, up to four times a day.
A day off. If our friends want to go away for the weekend, or even for the day, they must book hospice care for D in advance. Since hospice costs £400 - 1000 per diem, they must remain within their sponsored allotment of 20 days a year. (Last year it was 30; just another microcosmic fall-out of the market implosion). Twenty days of respite sounds like a lot, until you start to do the math:
One weekend = 3 days of hospice
Since any trip they take requires setting up D at the hospice care (half a day, plus/minus) and picking him up (another half a day), that's nearly one full day, already gone. One short trip abroad would use up half their annual allotment. (And yes, each of them has family abroad).
I haven't even touched on their morning routine --morning time, school travel, bath time, bed time -- since I don't know much about those things. Our conversation touched on other, "regular" issues, like our satisfaction level [medium-to-low] with our respective kids' education systems. (They have other, "normal" children and work hard to make sure these children lead "normal" lives, inasmuch as the siblings of special children live normal lives).
These friends are some of the brightest people I know. They are well-educated, balanced, hard-working, and kind. They have family for moral support, some extra help at home, and a hard-earned familiarity with "the system." But this is their reality, every day, and it is exhausting. Sometimes, when I feel my own exhaustion at the end of a long morning of work and an even longer afternoon of whiny children, I think of them. I don't know how they do it. But they do it.
If, despite the crash, you still have a few shekels / dollars / pounds to spare and would like to donate them to a worthy cause, please consider a respite program such as Shalva, a rehab hospital such as Alyn, or any similar organization -- there are hundreds -- you feel is worthwhile.
Aliyah עליה. Lit., the act of moving or being raised upwards, often used to mean immigration to Israel, considered a spiritual / existential "moving upwards."
Beit Knesset בית כנסת Lit., "house of gathering," i.e. synagogue (a.k.a. "shul" in Yiddish).
Hagim חגים (sing: hag חג). Lit, holidays, but often referring to the set of holidays -- Rosh haShana, Yom Kippur, Sukkot, and Simhat Torah -- that fall during the autumn month of Tishrei.
Hakafot הקפות (See Simhat Torah).
Halacha הלכה Jewish law, the collection of rules and standards concerning how to live one's life according to Rabbinic standards.
Haredi חרדי Us. translated "ultra-Orthodox," and characterized by a very strict, conservative interpretation of Jewish law, us. under the guidance of a particular Rabbi.
Havdalah הבדלה. Lit. separation, spec. the short ritual conducted after dark on Saturday night, which marks the end of Shabbat and the beginning of the new week.
Hesed חסד. Kindness, piety, a righteous action or behavior or attitude. Not necessarily a mitzvah, per se, but definitely a worthy trait or behavior.
Klal Yisrael כלל ישראל. Lit, the whole of Israel, i.e. the Jewish community as a whole (if there is such a thing...)
Makolet מכולת. The local, corner mini-market that sells anything from fresh produce and dairy products, to school supplies and popsicles. From the word kol, כל, "all" or "everything."
Minyan מנין A quarum of ten men, age 13+, who gather for prayers, us. three times a day.
Mitzvot מצוות (sing: mitzvah מצוה). The 613 ritual and societal obligations G-d, and then the early Rabbis, established for the Jewish people. There are positive ("Thou shalt...") and negative ("Thou shalt not...") mitzvot covering every aspect of life.
Moshav מושב A jointly-owned, agriculture-based Israeli community. We live on Moshav land but do not hold ownership of Moshav property.
Rabbanit רבנית (Yiddish: Rebbitzin): 1. The wife of a rabbi. 2. A female, married woman who is considered very learned, knowledgeable and inspirational within her community.
Rebbe (Yiddish): An especially learned rabbi, us. the leader of a community or teacher of boys in a religious school.
Shabbat שבת (Yiddish / Askenazi pronunciation: Shabbes). The Jewish Sabbath. Begins 18 minutes before sundown Friday evening, ends 25 hours later, and involves a myriad of mitzvot. See the Chabad site for more.
Shiva שבעה Lit. "seven," spec. the seven days of Jewish mourning observed by immediate family members of the deceased. See Patti's blog for a simple yet thorough explanation, the Aish haTorah site for a longer one.
Shomrei Shabbat שומרי שבת (sing: Shomer/et Shabbat שומר/ת שבת). Sabbath observer; namely, a Jewish person who keeps the Sabbath according to traditional Rabbinic law.
Simhat Torah שמחת תורה. Lit. A celebration of Torah, following the High Holidays. On this festival we complete our yearly cycle reading the Five Books of Moses and return to the beginning.
Tefilla תפילה (pl: tefilot תפילות). Prayer, both formal / standardized and informal.
Tush"ba תושב"ע. Abbrev. for Torah sh'Ba'al Peh, aka the Oral Law, consisting of the Mishna and Gemarra, also known as Talmud.
Tzniut צניעות "Modesty," primarily referring to a woman's standards of dress and/or behavior.